Randomized Trial of a Shared Decision-Making Intervention Consisting of Trade-Offs and Individualized Treatment Information for <i>BRCA1/2</i> Mutation Carriers

Roosmalen, Mariëlle S. van; Stalmeier, Peep F. M.; Verhoef, Lia C.G.; Hoekstra-Weebers, Josette E. H. M.; Oosterwijk, Jan C.; Hoogerbrugge, Nicoline; Moog, Ute; Daal, W.A.J. van

doi:10.1200/jco.2004.05.066

Cited by 106 publications

(109 citation statements)

References 34 publications

Supporting

Mentioning

103

Contrasting

Order By: Relevance

“…Several studies suggest using cancer genetic testing decision aids before testing to better inform patients about testing and to assure that they have more accurate risk perceptions. [115][116][117][118] An example of a decision aid used before cancer genetic testing is the computer program "Breast Cancer Risk and Genetic Testing," which is a CD-ROM-based program designed to educate women about breast cancer, heredity, and the benefits and limitations of genetic testing. Users reported that this program was easy to use and provided beneficial educational information before the genetic counseling session, thus allowing the genetic counselors to spend more time discussing specific individual risks and specific psychological concerns.…”

Section: Discussionmentioning

confidence: 99%

Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

View full text Add to dashboard Cite

As genetic testing for hereditary cancer syndromes has transitioned from research to clinical settings, research regarding its accompanying psychosocial effects has grown. Men and women being tested for hereditary cancer syndromes may experience some psychological distress while going through the process of testing or after carrier status is identified. Psychological distress appears to decrease over the course of the first year and it is typically not clinically significant. Longer term studies show mixed results with some mutation carriers continuing to experience elevated distress. Baseline distress is the greatest risk factor for both immediate (weeks-12 months) and long-term psychological distress (18 mo-8 years post genetic testing). In addition to baseline psychological distress, other risk factors can be identified to help identify individuals who may need psychosocial interventions during the genetic testing process. The challenges of providing clinical care to the growing population of individuals identified to be at increased risk for heritable cancers present opportunities for research and new models of care. Cancer 2015;121:341-60. V C 2014 American Cancer Society.KEYWORDS: BRCA1, BRCA2, HNPCC, Lynch syndrome, genetic testing, unaffected carrier, carrier, hereditary cancer syndrome, riskreducing surgeries, psychosocial. INTRODUCTIONSeveral familial cancer syndromes that confer a high lifetime risk of cancer can be identified with genetic testing, and greater numbers of men and women will consider testing as the availability and public awareness of genetic testing for cancer susceptibility continue to increase. Research to date suggests that these individuals will have varied emotional responses to the process of genetic testing as well as its results.When genetic testing for cancer syndromes first transitioned from research protocols to clinics, there was initial concern that it would be similar to genetic testing for Huntington disease. Many worried that knowing they are at high risk for cancer in the future may be too distressing for some individuals, possibly even leading to suicide. However, several systematic reviews focusing primarily on hereditary breast and ovarian cancer (HBOC) and Lynch syndrome, also known as hereditary nonpolyposis colon cancer (HNPCC), have demonstrated that most individuals who have a mutation identified in an associated gene cope well with the knowledge of their genetic status. 1-3 Data regarding psychological implications of the genetic testing process are the most robust for women who present for HBOC risk assessment, which involves discussion of the BRCA1 and BRCA2 genes, although there are increasing studies for HNPCC, familial adenomatous polyposis (FAP), and other hereditary cancer syndromes.Although the rates of distress in individuals undergoing genetic testing vary, they appear to be relatively small. Studies have demonstrated that approximately 6% to 24% of individuals undergoing genetic testing for a BRCA1/BRCA2-associated or HNPCC-associated mutations repo...

show abstract

Section: Discussionmentioning

confidence: 99%

Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

View full text Add to dashboard Cite

show abstract

“…Research studies have examined shared decision-making (SDM) for a variety of illnesses and disabilities, including treatment decisions related to cancer 51 , mental illness 52 , and substance abuse. 53 Results have demonstrated that SDM leads to enhanced patient knowledge and patient satisfaction with treatment choices (Clinical Scenario 4).…”

Section: Shared Decision-making To Optimize Medica-tion Usementioning

confidence: 99%

Recommendations for Providers on Person-Centered Approaches to Assess and Improve Medication Adherence

et al. 2016

View full text Add to dashboard Cite

Medication non-adherence is a significant clinical challenge that adversely affects psychosocial factors, costs, and outcomes that are shared by patients, family members, providers, healthcare systems, payers, and society. Patient-centered care (i.e., involving patients and their families in planning their health care) is increasingly emphasized as a promising approach for improving medication adherence, but clinician education around what this might look like in a busy primary care environment is lacking. We use a case study to demonstrate key skills such as motivational interviewing, counseling, and shared decisionmaking for clinicians interested in providing patientcentered care in efforts to improve medication adherence. Such patient-centered approaches hold considerable promise for addressing the high rates of nonadherence to medications for chronic conditions. A dherence to medications is often suboptimal-up to 50 % of patients do not take their prescribed medication as recommended. 1-4 Medication non-adherence is associated with adverse health outcomes as well as negative social and economic consequences. [5][6][7] The problem of medication nonadherence is often multifaceted and multifactorial; in general, most conceptual models of medication non-adherence take an ecological perspective, and include patient factors (e.g., literacy, cognitive function), provider factors (e.g., complex regimens), social/community factors (e.g., access to providers and pharmacy), health care factors (e.g., interaction with healthcare system, trust, prior authorization, fragmentation), and policy implications (e.g., coverage of medication). 8-10 Thus, to be effective, interventions designed to improve appropriate medication use must adopt a comprehensive approach, often combining numerous proven strategies. Several evidence reviews have identified interventions with modest effects in promoting both overall and condition-specific medication adherence. [11][12][13][14][15][16] Given the complex, multifactorial cause of medication non-adherence, interventions can be similarly multifactorial and multi-level. In this paper we focus on the physician-patient level to furnish providers with a guide to applying adherence research in the clinical encounter.Evidence increasingly demonstrates that adopting a personcentered approach for medication use that incorporates patient beliefs, preferences, goals, and barriers to medication-taking (e.g., cost, technological ability, concerns about medication prescribing and use) leads to better clinical outcomes. 17,18 Clinicians are in a key position to elicit this information from patients and to incorporate it into medication-related decisions, thereby improving medication adherence rates. Person-centered care focuses on providing patients with greater choice, recognizing their roles as consumers of health care who know best their own beliefs and preferences. This care is meant to encourage value concordance-in this case, the match between the treatment that is selected and the treatment that i...

show abstract

“…Original study aims and detailed methods have been published elsewhere [21,22]. Questionnaires were sent at baseline, T1, that is after blood sampling to test for a BRCA1/2 mutation, at T2, 4 weeks after blood sampling, at T3, 2 weeks after a positive test result and at T4, 3 months after a positive test result.…”

Section: Methodsmentioning

confidence: 99%

“…Half of the women received a video and brochure [21], dealing with the decision between prophylactic surgery or screening for breast/ovarian cancer, 2 weeks after the blood sample, together with a follow-up questionnaire to evaluate this information. The outcome measures have been decribed in full detail [21,22]. A brief summary is given below.…”

Section: Methodsmentioning

confidence: 99%

The decision evaluation scales

Stalmeier

Roosmalen²,

Verhoef³

et al. 2005

Patient Education and Counseling

View full text Add to dashboard Cite

There are several instruments to assess how patients evaluate their medical treatment choice. These are used to evaluate decision aids. Our objective is to investigate which psychological factors play a role when patients evaluate their medical treatment choices. A pool of 36 items was constructed, covering concepts such as uncertainty about and satisfaction with the decision, informed choice, effective decision making, responsibility for the decision, perceived riskiness of the choice, and social support regarding the decision. This pool was presented to patients at high risk for breast and ovarian cancer, awaiting a genetic test result, and facing the choice between prophylactic surgery or screening. Additional measures were assessed for validation purposes. Factor and Rasch analyses were used for factor and item selection. Construct validity of emerging scales was assessed by relating them with the additional measures. Three factors summarised the psychological factors concerning decision evaluation: Satisfaction-Uncertainty, Informed Choice, and Decision Control. Reliabilities (Cronbach's a) of the three scales were 0.79, 0.85, and 0.75, respectively. Construct validity hypotheses were confirmed. The first two scales were similar to previously developed scales. Of these three scales, the Decision Control scale correlated most strongly with the well-being measures, was associated with partner's agreement and physician's preferences as perceived by patients, and with a negative emotional reaction to the information material. In conclusion, the Decision Control scale is a new scale to evaluate decision aids, and it appears to be rooted in health psychological theories.

show abstract

Randomized Trial of a Shared Decision-Making Intervention Consisting of Trade-Offs and Individualized Treatment Information for BRCA1/2 Mutation Carriers

Abstract: We conclude that the SDMI improved decision making in unaffected BRCA1/2 mutation carriers. Supporting decision making in a systematic way using trade-offs is beneficial for these women.

Cited by 106 publications

References 34 publications

Psychiatric implications of cancer genetic testing

Psychiatric implications of cancer genetic testing

Recommendations for Providers on Person-Centered Approaches to Assess and Improve Medication Adherence

The decision evaluation scales

Contact Info

Product

Resources

About